Election 2024: How Democrats and Republicans Are Failing Pain Patients

By Crystal Lindell

Now that both of the major U.S. political parties have held their national conventions, each has also released their 2024 party platforms outlining where they stand on specific issues. 

The platforms aren’t binding, but they do offer some insight into how the parties, and thus their respective presidential nominees, view different concerns facing the country. 

As a pain patient, I’m especially interested in how the two major parties are handling the topic of opioid medication. And I have to say that neither one seems great on the issue or even aware how millions of pain patients are suffering. 

The Democrats – with Vice President Kamala Harris as their nominee – are still focusing on opioid-phobia, while continuing to ignore the problems many pain patients face. 

The Republicans – with former President Donald Trump as their nominee  – don’t bother even mentioning the word “opioid” in their platform at all. 

Both parties do also have sections about illicit fentanyl coming over the southern border. 

The Democratic platform addresses fentanyl in a section titled “Beating the Opioid Epidemic.” I’m not a fan of how they framed the issue.  

“For too long, the scourge of opioids has torn through our communities, ripping apart families and shattering lives,” the Democratic platform states. “Our nation’s opioid epidemic impacts Americans in every corner of the country, from small towns to large cities to Tribal lands. Far too many Americans have lost loved ones to addiction and overdose. The Biden-Harris Administration is strengthening prevention, investing in treatment, and expanding recovery support services.”

The Democrats then go on to list what they see as their opioid-related achievements. For example, they say the Biden-Harris administration has increased the number of licensed providers who can offer medication-based addiction treatment from 129,000 to 2 million.

They also point out that they have made naloxone, an overdose-prevention drug, available over-the-counter at grocery stores and pharmacies. While I am glad to see expanded access to any medication, I just wish they hadn’t stopped at naloxone. 

The Democrats also brag about how they are “seizing record amounts of fentanyl and securing our border.” They also claim the administration has arrested more people for fentanyl-related crimes in the last two years than in the previous five years combined, while funding “more cutting-edge inspection machines to help detect fentanyl.”

Overall, the language is pretty stigmatizing and doesn’t mention the biggest opioid-related issue that’s actually impacting many people that I know: the fact that patients cannot get pain treatment when they need it. 

Death Penalty for Drug Dealers

Meanwhile, if you search for the word “opioid” in the Republican platform, you get zero results. However, under a section titled "Secure the Border," they say they’ll use the U.S. military to stop fentanyl smugglers.

"We will deploy the U.S. Navy to impose a full Fentanyl Blockade on the waters of our Region – boarding and inspecting ships to look for fentanyl and fentanyl precursors," the GOP platform states.

That framing tracks with how Trump has been addressing the issue. Last month, Trump drastically inflated fentanyl death numbers by claiming that we were “losing 300,000 people a year to fentanyl.” In fact, the number of opioid-related deaths is about 81,000 annually, most of them involving fentanyl. 

In previous statements, Trump said he would impose the death penalty as punishment for “everyone who sells drugs, gets caught selling drugs.”

Those types of lies and exaggeration only serve to further opioid-phobia, making doctors scared to prescribe any opioid-based pain medication for any reason. 

Overall, neither party seems to have pain patient access to opioid medication on their radar at all. While they ignore the issue, patients across the country suffer needlessly from the moral and legal panic about opioids. 

In an ideal world, the political parties would be promising to expand access to pain medications like hydrocodone, which has been greatly restricted over the last decade, despite being relatively safe and effective at treating pain. Instead they are offer a plan to re-educate medical professionals about addiction treatment, while ignoring the very real dangers of not treating pain

We seem to be stuck with two parties who refuse to even acknowledge the problems pain patients face, much less address them. 

Kamala Harris’ Stepdaughter Draws Backlash for Advocating Pain Treatments

By Crystal Lindell

Ella Emhoff, the 25-year old stepdaughter of Vice President Kamala Harris, recently revealed that she has chronic back pain and shared a list of ways that she tries to address it. 

It’s a move that could give a boost to patient advocacy, especially if her stepmother moves into the White House.

Emhoff’s social media posts about pain and her lengthy list of potential treatments have gotten some pushback in the media, in part because one of the things Emhoff advocates for is ketamine infusions for chronic pain. The anesthetic has been a hot topic recently for its role in the drowning death of actor Matthew Perry. Last week prosecutors brought charges against five people who helped supply Perry with ketamine. 

Emhoff shared her chronic pain story via Instagram, where she has nearly 400,000 followers, writing that she was born with a tethered spine, which caused her back to not properly lengthen when she was growing up. That, in turn, caused kyphosis, an abnormally formed spine also known as a “hunchback.”

Emhoff said she was in and out of doctors’ offices for physical therapy for most of her adolescence, and then eventually got lower back surgery, which led to her growing taller. But she still has chronic back pain. 

After receiving a lot of responses to sharing her story, she then followed-up by sharing a link to a Google Doc list of pain management options, which she calls “The Big Pain Management List.” 

“Alright the responses have been COMING IN HOT. It's actually very comforting seeing how many people can relate to chronic pain and also very sad," Emhoff wrote, sharing a disclaimer about her list.

"These are all just recommendations made to me. These should not be taken as medical advice. I am just a girl tryna feel less pain."

INSTAGRAM

Emhoff’s list is broken down into six categories: devices, topicals, exercises, lifestyle changes and books. Most of the recommendations are probably common knowledge to anyone who's been dealing with chronic pain. But the list still offers a good, well-organized resource for anyone looking for new or old ideas to relieve pain. 

Under devices, she includes a firm mattress and red light therapy pad. For topicals, she suggests lidocaine patches and salt baths. Under exercises, Emhoff includes things like weighted squats and pilates. For lifestyle, she recommends things like shorter work days, “weed” and an anti-inflammatory diet. 

The therapies column is where she lists ketamine infusions, as well as somatic therapy and EDMR therapy. Under books, she recommends “The Pain Management Workbook" and “The Way Out.”

Personally, I find it a little disappointing that Emhoff never mentions one of the most effective pain treatments we have: opioid-based pain medication. It’s not as though she was worried about being controversial, given her inclusion of ketamine therapy. Perhaps opioids aren’t helpful for her, but they are helpful for millions of others dealing with chronic pain. 

Regardless, I’m always glad to see anyone with influence drawing awareness to the suffering those of us with chronic pain endure. My hope is that she will be able to push her powerful stepmom to advocate for broader access to some of her recommendations, such as ketamine and cannabis. 

Of course, because of Emhoff’s visibility and political connections, some publications covered her pain management suggestions as though they were controversial.  

The Daily Mail headline read: “Kamala Harris' woke step daughter pushes ketamine and shorter working days in excruciating Gen Z rant.”

The New York Post headline read: "VP Kamala Harris’ stepdaughter Ella Emhoff pushes ketamine, ‘shorter work days’ in ‘pain management’ rant."

It’s a little disappointing to see those types of headlines around the topic of chronic pain. My guess is that many of Emhoff’s followers suffer from chronic pain, and many of them may even benefit from her recommendations. But headlines like that can scare people away from trying treatments like ketamine, which is normally used for depression but some people find very useful treating some types of chronic pain. 

Thankfully, Emhoff has the ability to reach out to pain patients directly through her social media. So even if other media entities try to frame her suggestions in a poor light, she’s still able to get her message out to those who need it.

Election May Determine Whether Marijuana Will Be Decriminalized

By Dr. Lynn Webster, PNN Columnist

“Times have changed. Marijuana should not be a crime,” Sen. Kamala Harris (D-CA) said last year when she and Rep. Jerry Nadler (D-NY) introduced the Marijuana Opportunity Reinvestment and Expungement Act (MORE Act). The current Democratic vice-presidential nominee called the legalization of marijuana an important step "toward racial and economic justice."

“We need to start regulating marijuana and expunge marijuana convictions from the records of millions of Americans so they can get on with their lives," said Harris.  

"Racially motivated enforcement of marijuana laws has disproportionally impacted communities of color. It’s past time to right this wrong nationwide and work to view marijuana use as an issue of personal choice and public health, not criminal behavior," added Nadler, who chairs the House Judiciary Committee.

Thirty-three states and the District of Columbia have legalized medical cannabis and several states allow its recreational use.  If it became law, the MORE Act would decriminalize marijuana at the federal level by removing it as a Schedule I controlled substance.

That wouldn't instantly remove all restrictions; states could still prohibit the sale of cannabis. But the MORE Act would give states more latitude to create laws to suit their needs, establish a trust fund to support programs for communities impacted by the war on drugs, and destroy or seal records of marijuana criminal convictions.

Game Changing Legislation

This week the House Judiciary Committee passed the MORE Act and later this month the full House is expected to approve the bill and send it to Senate. Chances are the bill will not pass the Senate, because Majority Leader Sen. Mitch McConnell (R-KY) opposes it -- while paradoxically supporting hemp farming.

However, if the MORE Act passes, it would be a game changer. It could open the floodgates for the development of products that contain tetrahydrocannabinol (THC), which is the psychoactive compound in marijuana.  Some research suggests THC alone, or THC and cannabidiol (CBD) combined, could be more effective than CBD alone for treating pain, anxiety, insomnia and other conditions. More research could discover life-changing new treatments.

Since THC has rewarding properties, such as inducing euphoria, any drug that includes THC would likely be a controlled substance. Nevertheless, decriminalizing marijuana would create enormous economic opportunities for growers and anyone in the business of finding solutions to medical problems for which marijuana or its derivatives may be useful.

It doesn’t seem likely that marijuana will be decriminalized at the federal level this year. Congress criminalized marijuana in 1937 and all attempts to reform the law at the federal level have ultimately failed. Our current Senate is unlikely to change the status quo.

But the upcoming election will likely determine whether the MORE Act has a chance to become law in the near future. Democratic presidential candidate Joe Biden supports legalization and decriminalization at the federal level, while President Trump is generally opposed to changing federal marijuana laws. The election will also determine which party controls the House and Senate.

It behooves every voter to become familiar with the candidates' positions regarding cannabis. Criminalizing marijuana has caused great harm. We, as voters, have the power to change that.  

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find him on Twitter: @LynnRWebsterMD.

Senator’s Letter Ignores Constituent’s Chronic Pain

By Pat Anson, Editor

Pain News Network received hundreds of comments and emails from readers responding to the open letter we published from Charles Malinowski, a 59-year old California man who suffers from Reflex Sympathetic Dystrophy (RSD) and other chronic pain conditions.

Malinowski is no longer able to obtain opioid medication and blames the CDC opioid guidelines for his “unspeakable and crippling pain.”

CHARLES MALINOWSKI

“Within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that,” Malinowski wrote in his letter. “Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick.”

Malinowski’s letter to Senator Kamala Harris (D-CA) hit home with many readers, who say they’ve been abandoned by doctors who are fearful of prescribing opioid medication.  

“You are correct in saying the CDC is in effect murdering us. I too suffer from chronic pain and am unable to obtain pain meds from a doctor due to CDC guidelines,” wrote one reader.

“I just read your letter and cried all the way through it. My son in law will turn 50 this month and has been living with RSD for over 8 years. His story is a carbon copy of yours. Since the change in his meds about a month ago, (he) is now showing signs of heart trouble,” wrote Jo Ellen.

“Charles you are not alone and this attack on pain patients is affecting every pain patient nationwide,” wrote Pam. “This is terrorism at its finest folks. How many more pain patients will die due to a fictitious opioid epidemic?”

“I’m stuck in bed suffering inhuman pain 24-7 days a week. I’m lucky I have sanity now to write this. For 17 years I was under the watchful eye of a very educated doctor. Now abandoned by all in the medical field,” wrote Christine.

“This exact thing happened to my husband. He unfortunately passed away from a heart attack 6 months later,” wrote Sharon. “I pray your letter falls into the correct place to save your life and many others that are now in the same situation.”

And what about Sen. Harris, who Malinowski wrote his letter to?

She sent him a form letter that completely ignored his severe pain and life-threatening situation. It focused instead on combating opioid abuse and treating addiction.

“Thank you for reaching out to me to express your concern about the opioid crisis,” Sen. Harris wrote. “This administration and Congress must treat opioid abuse as a public health crisis. We need more funding to combat the opioid epidemic that is threatening millions.”

Malinowski replied to Sen. Harris with a second letter.

“I was very disappointed to discover that your response to me was an apparent boilerplate letter about continuing the already out-of-control hysteria over the so-called opioid epidemic,” Malinowski wrote. “My letter had nothing to do with controlling the illicit dispersal of opioids.

SEN. KAMALA HARRIS (D-CA)

"My letter was about the new CDC opioids guidelines being a literal death sentence for people like me. This is a literal death sentence because medication we depend upon is being withheld from us in a grossly and medically irresponsible manner. How you could have completely missed the blatantly obvious topic of my letter and responded so completely off-topic is simply beyond me. I think your response was shamefully ignorant and completely irresponsible.”

Unfortunately, this is not the first time we’ve heard from patients who wrote to their senator or congressman about the poor state of their pain care and gotten a form letter in response about the “opioid epidemic.” Which is no reason to stop trying or holding politicians accountable.  

“I want to hear from you. Contact me,” Sen. Harris says on her homepage. 

PNN tried to contact you, Sen. Harris. We emailed, called and left messages at your offices in Washington and Los Angeles several times in the last two weeks. Not only were we unable to speak to anyone on your staff, we couldn't even get someone to answer your phone. And we have yet to get a reply.

Neither has Charles Malinowski.  

(Update: On January 26, I finally received a reply from Sen. Harris.  But her emailed letter was yet another misdirected form letter. It thanked me for reaching out "to share your views opposing abortion."   

An Open Letter to My Senator: CDC Has Killed Me

(Editor’s Note: Charles Malinowski is a 59-year old Paso Robles, California man who lives with Reflex Sympathetic Dystrophy (RSD), degenerative disc disease, ankylosing spondylitis, spinal stenosis and other chronic pain conditions.  He recently wrote this open letter to U.S. Senator Kamala Harris (D-CA). We thought his letter worth sharing with PNN readers.)

Dear Senator Harris,

The CDC has killed me!

Let me repeat that: The CDC has killed me!

I have a severe neurological condition that causes me unspeakable and crippling pain. Pain medication is literally the only thing keeping me alive. But with the issuance of the CDC’s short sighted, so-called voluntary opioid prescribing guidelines -- which are being rammed down the throats of medical providers -- my pain management doctor has cut me off of opiates.

For the last 10 years, I have been subjected to nearly every type of physical therapy, medical treatment and medication applicable to my affliction. The one and only thing that has ever had any demonstrable benefit in even temporarily suppressing my pain to a tolerable level has, unfortunately, been opiates.

In early October, I was told that I would have to stop taking either the oral opiates or the intrathecal opiates, as it was now illegal for a person to receive two different types of opiates via two different delivery methods concurrently. This was a major problem, as even with both oral and intrathecal opiates, my pain was severely under-managed to the point where I was almost completely bedridden. I left the house only to go to doctor's appointments.

When I was told that my pain management regimen - specifically the opiates - was going to be cut in half, even though my pain was already grossly under-managed, I spoke out about this.

CHARLES MALINOWSKI

As a result, not only was I cut off from the oral opiates, I got kicked out of the pain management practice where I have been a patient for more than seven years. The doctor said he didn't want to risk his license - but was perfectly willing to risk my life - over the CDC opioid guidelines.  These guidelines are supposed to be voluntary and are not supposed to take desperately needed pain medication away from legitimate chronic pain sufferers such as myself.

I expect that within 60 days, I will be dead from either heart failure or a stroke due to my body's inability to cope with the stress of the unrelenting pain. My neuropsychologist, who has been treating me for nearly 10 years, has consistently rated my level of pain as moderate to extreme, even while being medicated with both oral and intrathecal opiates, which I am now denied.

I'm not dead yet, but within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that.

Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick - of one Charles James Malinowski, that being myself.

I would like to thank you, Senator, and all the rest of your colleagues for murdering me.

To help ease your conscience, it is not just me that Congress is complicit in murdering, but thousands, possibly tens of thousands of people in like positions.

Sincerely,

Charles Malinowski

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.